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Shared decision making has been on the policy agenda in the UK for at least twelve years, but it lacked a comprehensive approach to delivery. That has changed over the past five years, and we can now see significant progress across all aspects of a comprehensive approach, including leadership at policy, professional and patient levels; infrastructure developments, including the provision of training, tools and campaigns; and practice improvements, such as demonstrations, measurement and coordination. All these initiatives were necessary, but the last, central coordination, would appear to be key to success.

The ‘improvement’ of health care is now established and growing as a field of research and practice. This article, based on qualitative data from interviews with 21 senior leaders in this field, analyses the growth of improvement expertise as not simply an expansion but also a multiplication of ‘ways of knowing’. It illustrates how health-care improvement is an area where contests about relevant kinds of knowledge, approaches and purposes proliferate and intersect. One dimension of this story relates to the increasing relevance of sociological expertise—both as a disciplinary contributor to this arena of research and practice and as a spur to reflexive critique. The analysis highlights the threat of persistent hierarchies within improvement expertise reproducing and amplifying restricted conceptions of both improvement and ‘better’ health care.

Especially when travel and gatherings were restricted during the pandemic, filming and livestreaming enabled more people to connect with funerals than could attend in person. Filming has also created another less well considered possibility: of revisiting a funeral via a recording. This Viewpoint outlines a range of experiences and opinions about this practice. We suggest careful attention is needed to its development and its implications for bereavement care in diverse circumstances.

Patient safety is a central aspect of healthcare quality, focusing on preventable, iatrogenic harm. Harm, in this context, is typically assumed to mean physical injury to patients, often caused by technical error. However, some contributions to the patient safety literature have argued that disrespectful behavior towards patients can cause harm, even when it does not lead to physical injury. This paper investigates the nature of such dignitary harms and explores whether they should be included within the scope of patient safety as a field of practice. We argue that dignitary harms in health care are—at least sometimes—preventable, iatrogenic harms. While we caution against including dignitary harms within the scope of patient safety just because they are relevantly similar to other iatrogenic harms, we suggest that thinking about dignitary harms can help to elucidate the value of patient safety, and to illuminate the evolving relationship between safety and quality.

Background Poverty and social deprivation have adverse effects on health outcomes and place a significant burden on healthcare systems. There are some actions that can be taken to tackle them from within healthcare institutions, but clinicians who seek to make frontline services more responsive to the social determinants of health and the social context of people’s lives can face a range of ethical challenges. We summarise and consider a case in which clinicians introduced a poverty screening initiative (PSI) into paediatric practice using the discourse and methodology of healthcare quality improvement (QI). Discussion Whilst suggesting that interventions like the PSI are a potentially valuable extension of clinical roles, which take advantage of the unique affordances of clinical settings, we argue that there is a tendency for such settings to continuously reproduce a narrower set of norms. We illustrate how the framing of an initiative as QI can help legitimate and secure funding for practical efforts to help address social ends from within clinical service, but also how it can constrain and disguise the value of this work. A combination of methodological emphases within QI and managerialism within healthcare institutions leads to the prioritisation, often implicitly, of a limited set of aims and governing values for healthcare. This can act as an obstacle to a genuine broadening of the clinical agenda, reinforcing norms of clinical practice that effectively push poverty ‘off limits.’ We set out the ethical dilemmas facing clinicians who seek to navigate this landscape in order to address poverty and the social determinants of health. Conclusions We suggest that reclaiming QI as a more deliberative tool that is sensitive to these ethical dilemmas can enable managers, clinicians and patients to pursue health-related values and ends, broadly conceived, as part of an expansive range of social and personal goods.

Person-centred care is a cornerstone of contemporary health policy, research and practice. However, many researchers and practitioners worry that it lacks a ‘clear definition and method of measurement,’ and that this creates problems for the implementation of person-centred care and limits understanding of its benefits. In this paper we urge caution about this concern and resist calls for a clear, settled definition and measurement approach. We develop a philosophical and conceptual analysis which is grounded in the body of literature concerning the theory and practice of person-centred care. We consider a range of influential definitional frameworks of person-centred care, highlighting their differences and showing that they do not correspond to a clearly circumscribed and consistent underlying concept. We argue that a degree of indeterminacy and vagueness should not be seen as a problem with the concept of person-centred care; these are features of a rich and contested concept which exists prior to and outside of practical and technical operational definitions and applications. We defend the value of operating with multiple accounts of person-centred care, arguing that what counts as being person-centred can vary across different care contexts, in relation to different patient groups, and as a reflection of different, defensible ethical perspectives. Although the idea of a single, agreed definition is attractive and may seem to be a practical or even necessary step towards meaningful and coordinated action, we argue that this is only the case in a qualified sense. Comprehensive attempts to narrow down the concept in this way should be resisted, as they risk undermining what it is that makes person-centredness a valuable concept in healthcare.

In this paper, we consider the role of conversations in contributing to healthcare quality improvement. More specifically, we suggest that conversations can be important in responding to what we call ‘normative complexity’. As well as reflecting on the value of conversations, the aim is to introduce the dimension of normative complexity as something that requires theoretical and practical attention alongside the more recognised challenges of complex systems, which we label, for short, as ‘explanatory complexity’. In brief, normative complexity relates to the inherent difficulty of deciding what kinds of changes are ‘improvements’ or, more broadly, what is valuable in healthcare. We suggest that explanatory and normative complexity intersect and that anyone interested in healthcare improvement needs to be sensitive to both. After briefly introducing the idea of normative complexity, we consider some contrasting examples of conversations, reflecting on how they do and might contribute to healthcare quality. We discuss both conversations that are deliberately organised and facilitated (‘orchestrated conversations’) and more informally occurring and routine conversations. In the first half of the paper, we draw on some examples of orchestrated and routine conversations to open up these issues. In the second half of the paper, we bring some more theoretical lenses to bear on both conversations and normative complexity, summarise what we take to be the value of conversations and draw together some of the implications of our discussion. In summary, we argue that conversations can play a crucial role in negotiating the normative complexity of healthcare quality improvement because of their capacity to hold together a plurality of perspectives, to contribute and respond to emergence and to help underpin institutional conditions for empathy and imagination.

This paper analyses the ethics of routine measurement for healthcare improvement. Routine measurement is an increasingly central part of healthcare system design and is taken to be necessary for successful healthcare improvement efforts. It is widely recognised that the effectiveness of routine measurement in bringing about improvement is limited—it often produces only modest effects or fails to generate anticipated improvements at all. We seek to show that these concerns do not exhaust the ethics of routine measurement. Even if routine measurement does lead to healthcare improvements, it has associated ethical costs which are not necessarily justified by its benefits. We argue that the practice of routine measurement changes the function of the healthcare system, resulting in an unintended and ethically significant transformation of the sector. It is difficult to determine whether such changes are justified or offset by the benefits of routine measurement because there may be no shared understanding of what is ‘good’ in healthcare by which to compare the benefits of routine measurement with the goods that are precluded by it. We counsel that the practice of routine measurement should proceed with caution and should be recognised to be an ethically significant choice, rather than an inevitability.

Policy discourse favours the idea of ‘ageing in place’ but many older people move home and into different kinds of residential settings. This paper extends understanding of how relocation can promote as well as diminish older people’s wellbeing. Using relational understandings of place and capabilities (people’s freedoms and opportunities to be and to do what they value) we explored wellbeing across the relocation trajectories of 21 people aged 65-91 years living in diverse residential settings in Scotland. We found that a diverse array of capabilities mattered for wellbeing and that relocation was often motivated by concerns to secure ‘at-risk’ capabilities for valued activities and relationships. Moving residence impacted several other capabilities, in addition to these, both, positively and negatively. We suggest that a capability approach offers a valuable lens for understanding and supporting wellbeing through relocation, with potential to overcome some key limitations of dominant behavioural models of late-life relocation.

Estimates suggest that over 10% of the UK population are affected by food insecurity. International evidence indicates that food insecurity is a risk factor for many long‐term health conditions, and can adversely affect people's ability to manage existing conditions. Food insecurity is thus not only a serious social concern but also a healthcare issue requiring the attention of UK health professionals. An exploratory qualitative study was undertaken to investigate the experiences and views of health professionals in north east Scotland, with a particular focus on support for people with long‐term conditions whom they believed were affected by food insecurity. Two focus groups and nine semi‐structured interviews were undertaken with a total of 20 health professionals between March and July 2016. Thematic analysis generated three main themes. The health professionals had (a) diverse levels of understanding and experience of food insecurity, but between them identified a range of (b) negative impacts of food insecurity on condition‐management, especially for diet dependent conditions or medication regimes, and for mental health. Even for those health professionals more familiar with food insecurity, there were various (c) practical and ethical uncertainties about identifying and working with food insecure patients (it could be difficult to judge, for example, whether and how to raise the issue with people, to tailor dietary advice to reflect food insecurity, and to engage with other agencies working to address food insecurity). This study indicates that health professionals working with food insecure patients have learning and support needs that warrant further investigation. Debates about health professionals’ responsibilities, and interventions to guide and support health professionals, including tools that might be used to screen for food insecurity, must also reflect the diverse lived needs and values of people who experience food insecurity.

Many healthcare practices expose people to risks of harmful outcomes. However, the major theories of moral philosophy struggle to assess whether, when and why it is ethically justifiable to expose individuals to risks, as opposed to actually harming them. Sven Ove Hansson has proposed an approach to the ethical assessment of risk imposition that encourages attention to factors including questions of justice in the distribution of advantage and risk, people's acceptance or otherwise of risks, and the scope individuals have to influence the practices that generate risk. This paper investigates the ethical justifiability of preventive healthcare practices that expose people to risks including overdiagnosis. We applied Hansson's framework to three such practices: an 'ideal' breast screening service, a commercial personal genome testing service, and a guideline that lowers the diagnostic threshold for hypertension. The framework was challenging to apply, not least because healthcare has unclear boundaries and involves highly complex practices. Nonetheless, the framework encouraged attention to issues that would be widely recognised as morally pertinent. Our assessment supports the view that at least some preventive healthcare practices that impose risks including that of overdiagnosis are not ethically justifiable. Further work is however needed to develop and/or test refined assessment criteria and guidance for applying them.

'Quality' is a widely invoked concept in healthcare, which broadly captures how good or bad a healthcare service is. While quality has long been thought to be multidimensional, and thus constitutively plural, we suggest that quality is also plural in a further sense, namely that different conceptions of quality are appropriately invoked in different contexts, for different purposes. Conceptual diversity in the definition and specification of quality in healthcare is, we argue, not only inevitable but also valuable. To treat one conception of healthcare quality as universally definitive of good healthcare unjustifiably constrains the ways in which healthcare can be understood to be better or worse. This indicates that there are limits to the extent to which improvement activities should be coordinated or standardized across the healthcare sector. While there are good reasons to advocate greater coordination in healthcare improvement activities, harmonization efforts should not advance conceptual uniformity about quality.

Background There is an ethical imperative to offer the results of trials to those who participated. Existing research highlights that less than a third of trials do so, despite the desire of participants to receive the results of the trials they participated in. This scoping review aimed to identify, collate, and describe the available evidence relating to any aspect of disseminating trial results to participants. Methods A scoping review was conducted employing a search of key databases (MEDLINE, EMBASE, PsycINFO, and the Cumulative Index to Nursing & Allied Health Literature (CINAHL) from January 2008 to August 2019) to identify studies that had explored any aspect of disseminating results to trial participants. The search strategy was based on that of a linked existing review. The evidence identified describes the characteristics of included studies using narrative description informed by analysis of relevant data using descriptive statistics. Results Thirty-three eligible studies, including 12,700 participants (which included patients, health care professionals, trial teams), were identified and included. Reporting of participant characteristics (age, gender, ethnicity) across the studies was poor. The majority of studies investigated dissemination of aggregate trial results. The most frequently reported mode of disseminating of results was postal. Overall, the results report that participants evaluated receipt of trial results positively, with reported benefits including improved communication, demonstration of appreciation, improved retention, and engagement in future research. However, there were also some concerns about how well the dissemination was resourced and done, worries about emotional effects on participants especially when reporting unfavourable results, and frustration about the delay between the end of the trial and receipt of results. Conclusions This scoping review has highlighted that few high-quality evaluative studies have been conducted that can provide evidence on the best ways to deliver results to trial participants. There have been relatively few qualitative studies that explore perspectives from diverse populations, and those that have been conducted are limited to a handful of clinical areas. The learning from these studies can be used as a platform for further research and to consider some core guiding principles of the opportunities and challenges when disseminating trial results to those who participated.

ObjectiveTo generate stakeholder informed evidence to support recommendations for trialists to implement the dissemination of results summaries to participants.DesignA multiphase mixed-methods triangulation design involving Q-methodology, content analysis, focus groups and a coproduction workshop (the REporting Clinical trial results Appropriately to Participants project).SettingPhase III effectiveness trials.ParticipantsA range of participants were included from ongoing and recently completed trials, public contributors, trialists, sponsors, research funders, regulators, ethics committee members.ResultsFewer than half of the existing trial result summaries contained information on the clinical implications of the study results, an item deemed to be of high importance to participants in the Q-methodology study. Priority of inclusion of a thank you message varied depending on whether considering results for individuals or populations. The need for personally responsive modes of sharing trial result summaries was highlighted as important. Ideally, participants should be the first to know of the results with regard to the timing of sharing results summaries but given this can be challenging it is therefore important to manage expectations. In addition to patients, it was identified that it is important to engage with a range of stakeholders when developing trial results summaries.ConclusionsResults summaries for trial participants should cover four core questions: (1) What question the trial set out to answer?; (2) What did the trial find?; (3) What effect have the trial results had and how will they change National Health Service/treatment?; and (4) How can I find out more? Trial teams should develop appropriately resourced plans and consult patient partners and trial participants on how ‘best’ to share key messages with regard to content, mode, and timing. The study findings provide trial teams with clear guidance on the core considerations of the ‘what, how, when and who’ with regard to sharing results summaries.

Highlights • First internationally agreed minimum set of outcomes deemed essential to be measured in all future studies evaluating interventions to improve decisions about participating in an randomized controlled trial. • Broad stakeholder involvement, including; potential trial participants (e.g., patients or others who could provide a lay perspective), trialists, research nurses, social scientists, clinicians, bioethicists, and research ethics committee members. • Represents outcomes that are of core importance to multiple stakeholders and, if adopted, will improve the relevance of future trials in this field., Objective To develop a core outcome set for the evaluation of interventions that aim to improve how people make decisions about whether to participate in randomized controlled trials (of healthcare interventions), the ELICIT Study. Study Design International mixed-method study involving a systematic review of existing outcomes, semi-structured interviews, an online Delphi survey, and a face-to-face consensus meeting. Results The literature review and stakeholder interviews (n = 25) initially identified 1045 reported outcomes that were grouped into 40 individually distinct outcomes. These 40 outcomes were scored for importance in two rounds of an online Delphi survey (n = 79), with 18 people attending the consensus meeting. Consensus was reached on 12 core outcomes: therapeutic misconception; comfort with decision; authenticity of decision; communication about the trial; empowerment; sense of altruism; equipoise; knowledge; salience of questions; understanding, how helpful the process was for decision making; and trial attrition. Conclusion The ELICIT core outcome set is the first internationally agreed minimum set of outcomes deemed essential to be measured in all future studies evaluating interventions to improve decisions about participating in an randomized controlled trial. Use of the ELICIT core set will ensure that results from these trials are comparable and relevant to all stakeholders. Registration COMET database - http://www.comet-initiative.org/Studies/Details/595.

Throughout March and April 2020, debate raged about how best to allocate limited intensive care unit (ICU) resources in the face of a growing COVID-19 pandemic. The debate was dominated by utility-based arguments for saving the most lives or life-years. These arguments were tempered by equity-based concerns that triage based solely on prognosis would exacerbate existing health inequities, leaving disadvantaged patients worse off. Central to this debate was the assumption that ICU admission is a valuable but scarce resource in the pandemic context.In this paper, we argue that the concern about achieving equity in ICU triage is problematic for two reasons. First, ICU can be futile and prolong or exacerbate suffering rather than ameliorate it. This may be especially true in patients with COVID-19 with emerging data showing that most who receive access to a ventilator will still die. There is no value in admitting patients with poor prognostic indicators to ICU to meet an equity target when intensive critical care is contrary to their best interests. Second, the focus on ICU admission shifts focus away from important aspects of COVID-19 care where there is greater opportunity for mitigating suffering and enhancing equitable care.We propose that the focus on equity concerns during the pandemic should broaden to include providing all people who need it with access to the highest possible standard of end-of-life care. This requires attention to culturally safe care in the following interlinked areas: palliative care, communication and decision support and advanced care planning.

Background Personalised care and support planning (CSP) has been shown to improve diabetes outcomes, patient experience and provider morale in the care of persons living with diabetes. However, this has not been confirmed in controlled studies. Patient Activation through Community Empowerment/Engagement for Diabetes Management (PACE-D) is a pragmatic controlled trial that evaluates the effectiveness of personalised CSP in persons living with diabetes in the public primary care setting in Singapore. Methods Teamlet-empanelled patients with diabetes at four polyclinics are recruited for this study. Participants who attend either of the two Intervention clinics are sent their investigation results in a care planning letter (CPL) to prepare them for the CSP conversation. This conversation is facilitated by a trained CSP practitioner who engages them in discussion of concerns, goals and action plans, and documents their plans for subsequent review. Participants in the two Control clinics will receive standard diabetes care. Participants will complete two or more CSP conversations (Intervention) or regular consultations (Control) at the annual review visits within the 18 months of the study. The sample size is calculated at 1620 participants, with glycated haemoglobin (HbA1c) as the primary outcome measure. Secondary outcome measures include patient activation (as measured by PAM-13) and changes in healthcare utilisation and cost. Discussion This study is a pragmatic trial that evaluates the effectiveness of personalised CSP in persons living with diabetes in a real world setting. It promises to provide insights with regard to the implementation of this model of care in Singapore and the region. Trial registration ClinicalTrials.gov Identifier NCT04288362. Retrospectively registered on 28 February 2020.

Background Since there is sound evidence that communication skills training (CST) programs modify communication behavior of oncology clinicians, they have been widely implemented over the last decades. However, more recently, certain aspects of this training have been criticized. Methods Based on this background, a call to re-launch a discussion about the future of CST led to the third European consensus meeting on communication in cancer care, organized by the Swiss Cancer League. During this meeting, which brought together European experts in the field of clinical communication and training of communication in the oncology setting, oncology clinicians, representatives of the European Society of Medical Oncology and a member of the European Oncology Nursing Society, the recommendations of the second European consensus meeting were updated and expanded. Results The expanded recommendations recall the guiding principles of communication in cancer care, underline the important role of clinician’s self-awareness, and of relational and contextual factors in clinical communication, and provide direction for the further development of communication training. Conclusion This third European consensus meeting defines key elements for the development of a next generation of communication training for oncology clinicians.

Many countries are experiencing increasing levels of demand for access to assisted reproductive technologies (ART). Policies regarding who can access ART and with what (if any) support from a collective purse are highly contested, raising questions about what state responses are justified. Whilst much of this debate has focused on the status of infertility as a disease, we argue that this is something of a distraction, since disease framing does not provide the far-reaching, robust justification for state support that proponents of ART seem to suppose. Instead, we propose that debates about appropriate state responses should consider the various implications for health and broader well-being that may be associated with difficulties starting a family. We argue that the harms and disruption to valued life projects of subfertility-related suffering may provide a stronger basis for justifying state support in this context. Further, we suggest that, whilst ART may alleviate some of the harm resulting from subfertility, population-level considerations can indicate a broader range of interventions aimed at tackling different sources of subfertility-related harm, consistent with broader public health aims.

Therapeutic privilege (TP) is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might be inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients’ needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal.

In this paper, we argue that there are important ethical questions about healthcare improvement which are underexplored. We start by drawing on two existing literatures: first, the prevailing, primarily governance-oriented, application of ethics to healthcare ‘quality improvement’ (QI), and second, the application of QI to healthcare ethics. We show that these are insufficient for ethical analysis of healthcare improvement. In pursuit of a broader agenda for an ethics of healthcare improvement, we note that QI and ethics can, in some respects, be treated as closely related concerns and not simply as externally related agendas. To support our argument, we explore the gap between ‘quality’ and ‘ethics’ discourses and ask about the possible differences between ‘good quality healthcare’ and ‘good healthcare’. We suggest that the word ‘quality’ both adds to and subtracts from the idea of ‘good healthcare’, and in particular that the technicist inflection of quality discourses needs to be set in the context of broader conceptualisations of healthcare improvement. We introduce the distinction between quality as a measurable property and quality as an evaluative judgement, suggesting that a core, but neglected, question for an ethics of healthcare improvement is striking the balance between these two conceptions of quality.

Definitions and interpretations of 'health literacy' have important implications for the delivery of health care and for health policy-related initiatives. We conducted a systematic review and critical analysis to determine the extent to which definitions of health literacy differ in the academic literature, the similarities and differences across definitions, and possible interpretations for the most commonly used definitions. We identified 250 different definitions of health literacy and grouped them into three categories: (i) most commonly used definitions (n=6), (ii) modified versions of these most commonly used definitions (n=133), and (iii) 'other' definitions (n=111). We found the most commonly used definitions to be open to multiple interpretations and to reflect underlying assumptions that are not always justifiable. Attention is needed to the ways in which differing definitions and interpretations of health literacy may affect patient care and the delivery of health literacy-related policy initiatives.Journal of Public Health Policy advance online publication, 19 May 2016; doi:10.1057/jphp.2016.18.

Positive claims about narrative approaches to healthcare suggest they could have many benefits, including supporting person-centred healthcare (PCH). Narrative approaches have also been criticised, however, on both theoretical and practical grounds. In this paper we draw on epistemological work on narrative and knowledge to develop a conception of narrative that responds to these concerns. We make a case for understanding narratives as accounts of events in which the way each event is described as influenced by the ways other events in the narrative are described. This view of narratives recognises that they can contribute knowledge of different kinds of connections between events: not just causal, and not just of patient’s perspectives. Additionally, narratives can add further epistemic value by suggesting potentially useful lines of inquiry. We take narrative approaches to healthcare to include clinicians considering both patients’ informational offerings and their own professional understandings as narratives. On this understanding, our account is able to overcome the major theoretical and practical criticisms that have been levelled against the use of narrative approaches in healthcare, and can help to explain why and how narrative approaches are consistent with PCH.

There are various reasons why efforts to promote “support for self-management” have rarely delivered the kinds of sustainable improvements in healthcare experiences, health and wellbeing that policy leaders internationally have hoped for. This paper explains how the basis of failure is in some respects built into the ideas that underpin many of these efforts. When (the promotion of) support for self-management is narrowly oriented towards educating and motivating patients to adopt the behaviours recommended for disease control, it implicitly reflects and perpetuates limited and somewhat instrumental views of patients. It tends to: restrict the pursuit of respectful and enabling ‘partnership working’; run the risk of undermining patients’ self-evaluative attitudes (and then of failing to notice that as harmful); limit recognition of the supportive value of clinician-patient relationships; and obscure the practical and ethical tensions that clinicians face in the delivery of support for self-management. We suggest that a focus on enabling people to live (and die) well with their long-term conditions is a promising starting point for a more adequate conception of support for self-management. We then outline the theoretical advantages that a capabilities approach to thinking about living well can bring to the development of an account of support for self-management, explaining, for example, how it can accommodate the range of what matters to people (both generally and more specifically) for living well, help keep the importance of disease control in perspective, recognize social influences on people’s values, behaviours and wellbeing, and illuminate more of the rich potential and practical and ethical challenges of supporting self-management in practice.

Background Policy encourages health care providers to listen and respond to feedback from patients, expecting that it will enhance care experiences. Enhancement of patients’ experiences may not yet be a reality, particularly in primary health care settings. Objective To identify the issues that influence the use and impact of feedback in this context. Design and Setting A realist synthesis of studies of the use of patient feedback within primary health care settings. Methods Structured review of published studies between 1971 and January 2015. Results Eighteen studies were reported in 20 papers. Eleven studies reported patient survey scores as a primary outcome. There is little evidence that formal patient feedback led to enhanced experiences. The likelihood of patient feedback to health care staff stimulating improvements in future patients’ experiences appears to be influenced predominantly by staff perceptions of the purpose of such feedback; the validity and type of data that is collected; and where, when and how it is presented to primary health care teams or practitioners and teams’ capacity to change. Conclusions There is limited research into how patient feedback has been used in primary health care practices or its usefulness as a stimulant to improve health care experience. Using a realist synthesis approach, we have identified a number of contextual and intervention-related factors that appear to influence the likelihood that practitioners will listen to, act on and achieve improvements in patient experience. Consideration of these may support research and improvement work in this area.

Objective To test the feasibility and assess the uptake and acceptability of implementing a consumer questions programme, AskShareKnow, to encourage consumers to use the questions ‘1. What are my options; 2. What are the possible benefits and harms of those options; 3. How likely are each of those benefits and harms to happen to me?’ These three questions have previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement. Methods This single-arm intervention study invited participants attending a reproductive and sexual health-care clinic to view a 4-min video-clip in the waiting room. Participants completed three questionnaires: (T1) prior to viewing the intervention; (T2) immediately after their consultation; and (T3) two weeks later. Results A total of 121 (78%) participants viewed the video-clip before their consultation. Eighty-four (69%) participants asked one or more questions, and 35 (29%) participants asked all three questions. For those making a decision, 55 (87%) participants asked one or more questions, while 27 (43%) participants asked all three questions. Eighty-seven (72%) participants recommended the questions. After two weeks, 47 (49%) of the participants recalled the questions. Conclusions Enabling patients to view a short video-clip before an appointment to improve information and involvement in health-care consultations is feasible and led to a high uptake of question asking in consultations. Practice Implications This AskShareKnow programme is a simple and feasible method of training patients to use a brief consumer-targeted intervention that has previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement and use of evidence-based questions.

Objectives This study asked: What is known from the existing literature about the empirical relationships between health literacy (HL) and the three stages of the treatment decision making (TDM) process: information exchange, deliberation, and deciding on the treatment to implement? Methods A scoping review of the literature was conducted. Four databases were searched and a total of 2772 records were returned. After de-duplication and three levels of relevance screening, 41 primary studies were included. Results Relationships between HL and information exchange were studied more often than relationships between HL and deliberation and deciding on the treatment to implement. Across the 41 studies, there was little overlap in terms the measure(s) of HL adopted, the aspect of TDM considered, and the characteristics of the study populations – making comparisons of the findings difficult. Multiple knowledge gaps and measurement-related problems were identified; including, the possibility that the process of TDM influences HL. Conclusion The importance of HL to the three stages of TDM is unclear because of the knowledge gaps and measurement-related problems that exist. Practice implications There are many uncertainties about how TDM, or the design and use of patient decision aids, should respond to patients with different levels of HL.

Discussion of unanticipated problems in care with patients and their families (‘open disclosure’) is now widely advocated. Despite international efforts and the introduction of a range of policies and guidance to promote such discussions, the expectations of policy makers and patients are often not matched in practice. We consider some reasons for the persistence of shortfalls in the occurrence and quality of open disclosure. We draw on research conducted to investigate the implementation of a ‘ Being open’ policy in England, reflecting particularly on insights derived from interviews with health care professionals. Health care professionals were broadly supportive of the idea of open disclosure. Some expressed well-recognized concern about punishment and being blamed, but this did not appear to be the main driver of their communication practices. Their accounts of what happened around particular problems in health care indicated that they brought a complex range of considerations to bear on questions of whether and how these were discussed with patients and relatives. Guidance about open disclosure based on assessments of levels of harm to patients can complicate and perhaps distort health care professionals’ approaches, particularly when the extent and/or cause of harm was uncertain. Health care professionals who engage in open disclosure must be able to negotiate appropriate ways through complex and sensitive discussions. The responses of patients and relatives are not always predictable and even the best open disclosure practice may not resolve problems and concerns. Guidance, training and support for staff need to reflect these challenges.

Objective To identify and examine tensions and uncertainties in person-centred approaches to self-management support – approaches that take patients seriously as moral agents and orient support to enable them to live (and die) well on their own terms. Methods Interviews with 26 UK clinicians about working with people with diabetes or Parkinson’s disease, conducted within a broader interdisciplinary project on self-management support. The analysis reported here was informed by philosophical reasoning and discussions with stakeholders. Results Person-centred approaches require clinicians to balance tensions between the many things that can matter in life, and their own and each patient’s perspectives on these. Clinicians must ensure that their supportive efforts do not inadvertently disempower people. When attending to someone’s particular circumstances and perspectives, they sometimes face intractable uncertainties, including about what is most important to the person and what, realistically, the person can or could do and achieve. The kinds of professional judgement that person-centred working necessitates are not always acknowledged and supported. Conclusion Practical and ethical tensions are inherent in person-centred support and need to be better understood and addressed. Practice implications Professional development and service improvement initiatives should recognise these tensions and uncertainties and support clinicians to navigate them well.

Shared decision making (SDM) is firmly on the policy agenda in the UK and a recent legal ruling has confirmed its importance. Policymakers, ethicists, professional regulators and societies, patient organisations and now the courts are committed to ensuring that SDM becomes the norm throughout the NHS, but an unfavourable economic climate makes this especially challenging. Considerable progress has been made over the last few years, with new learning from demonstration sites, various initiatives in capacity building and training, wider availability of patient decision aids, and important leadership initiatives. Enthusiasm for this way of working is growing among clinicians, patients and managers, but it could be undermined if SDM comes to be seen primarily as a means of cost control.

This study was funded by the Chief Scientist Office, Scotland CZH/4/807. Background Continued smoking after cancer adversely affects quality of life and survival, but one fifth of cancer survivors still smoke. Despite its demands, cancer presents an opportunity for positive behaviour change. Smoking often occurs in social groups, therefore interventions which target families and individuals may be more successful. This qualitative study explored patients, family members and health professionals’ views and experiences of smoking and smoking cessation after cancer, in order to inform future interventions. Methods In-depth qualitative interviews (n=67) with 29 patients, 14 family members and 24 health professionals. Data were analysed using the ‘Framework’ method. Results Few patients and family members had used National Health Service (NHS) smoking cessation services and more than half still smoked. Most recalled little ‘smoking-related’ discussion with clinicians but were receptive to talking openly. Clinicians revealed several barriers to discussion. Participants’ continued smoking was explained by the stress of diagnosis; desire to maintain personal control; and lack of connection between smoking, cancer and health. Conclusions A range of barriers to smoking cessation exist for patients and family members. These are insufficiently assessed and considered by clinicians. Interventions must be more effectively integrated into routine practice. Publisher PDF

Objective To measure the value the patients place on different aspects of person-centred care. Design We systematically identified four attributes of person-centred care. We then measured their value to 923 people with either chronic pain or chronic lung disease over three discrete choice experiments (DCEs) about services to support self-management. We calculated the value of each attribute for all respondents and identified groups of people with similar preferences using latent class modelling. Setting DCEs conducted online via a commercial survey company. Participants Adults with either chronic pain (two DCEs, n=517 and 206, respectively) or breathlessness due to chronic respiratory disease (n=200). Results Participants were more likely to choose services with higher level person-centred attributes. They most valued services that took account of a person’s current situation likelihood of selection increased by 16.9% (95% CI=15.4 to 18.3) and worked with the person on what they wanted to get from life (15.8%; 14.5 to 17.1). More personally relevant information was valued less than these (12.3%; 11.0 to 13.6). A friendly and personal communicative style was valued least (3.8%; 2.7 to 4.8). Latent class models indicated that a substantial minority of participants valued personally relevant information over the other attributes. Conclusion This is the first study to measure the value patients place on different aspects of person-centred care. Professional training needs to emphasise the substance of clinical communication—working responsively with individuals on what matters to them—as well as the style of its delivery.

Background Support for self-management (SSM) is a prominent strand of health policy internationally, particularly for primary care. It is often discussed and evaluated in terms of patients’ knowledge, skills and confidence, health-related behaviours, disease control or risk reduction, and service use and costs. However, these goals are limited, both as guides to professional practice and as indicators of its quality. In order to better understand what it means to support self-management well, we examined health professionals’ views of success in their work with people with long-term conditions. This study formed part of a broader project to develop a conceptual account of SSM that can reflect and promote good practice. Methods Semi-structured individual interviews (n = 26) and subsequent group discussions (n = 5 groups, 30 participants) with diverse health professionals working with people with diabetes and/or Parkinson’s disease in NHS services in London, northern England or Scotland. The interviews explored examples of more and less successful work, ways of defining success, and ideas about what facilitates success in practice. Subsequent group discussions considered the practical implications of different accounts of SSM. Interviews and group discussions were audio-recorded, transcribed and analysed thematically. Results Participants identified a wide range of interlinked aspects or elements of success relating to: health, wellbeing and quality of life; how well people (can) manage; and professional-patient relationships. They also mentioned a number of considerations that have important implications for assessing the quality of their own performance. These considerations in part reflect variations in what matters and what is realistically achievable for particular people, in particular situations and at particular times, as well as the complexity of questions of attribution. Conclusions A nuanced assessment of the quality of support for self-management requires attention to the responsiveness of professional practice to a wide, complex range of personal and situational states, as well as actions and interactions over time. A narrow focus on particular indicators can lead to insensitive or even perverse judgements and perhaps counterproductive effects. More open, critical discussions about both success and the assessment of quality are needed to facilitate good professional practice and service improvement initiatives. Electronic supplementary material The online version of this article (doi:10.1186/s12875-017-0611-7) contains supplementary material, which is available to authorized users.

Objective Family caregivers are regularly involved in cancer consultations and treatment decision-making (DM). Yet there is limited conceptual description of caregiver influence/involvement in DM. To address this, an empirically-grounded conceptual framework of triadic DM (TRIO Framework) and corresponding graphical aid (TRIO Triangle) were developed. Methods Jabareen’s model for conceptual framework development informed multiple phases of development/validation, incorporation of empirical research and theory, and iterative revisions by an expert advisory group. Results Findings coalesced into six empirically-grounded conceptual insights: i) Caregiver influence over a decision is variable amongst different groups; ii) Caregiver influence is variable within the one triad over time; iii) Caregivers are involved in various ways in the wider DM process; iv) DM is not only amongst three, but can occur among wider social networks; v) Many factors may affect the form and extent of caregiver involvement in DM; vi) Caregiver influence over, and involvement in, DM is linked to their everyday involvement in illness care/management. Conclusion The TRIO Framework/Triangle may serve as a useful guide for future empirical, ethical and/or theoretical work. Practice implications This Framework can deepen clinicians’s and researcher’s understanding of the diverse and varying scope of caregiver involvement and influence in DM.

This chapter discusses Part I of this book, which has provided an introduction to the history and development of HTA and to the various rationales for, and forms of, patient involvement within it. One of the points that recurred in the introductory chapters was the sense that patient involvement in HTA is ‘still contentious’ to some people (Sect. 5.4), and in part because of concerns such as ‘scientific debate gets softened by inclusion of patients’ perspectives’ (Table 5.1), and patient involvement is ‘a potential hazard in achieving independent evidence-based decisions’ (Sect. 3.1). To address these concerns effectively, we suggest it will be important both (1) to identify, challenge and avoid perpetuating any unfounded assumptions or faulty reasoning that might lie behind them and (2) to ensure that advocates of patient involvement in HTA avoid overstating its merits, acknowledge variability in its quality and promote the most robust and defensible approaches. In what follows, we offer a few suggestions to support both kinds of endeavour. We do this in the interests of ensuring that, moving forward, patient involvement is discussed and developed in ways that not only fulfil its advocates’ aspirations that it will improve HTA but that can also convince those who are currently sceptical about its value. Our comments apply primarily to patient involvement in assessments of particular health technologies rather than in HTA policy or the development of HTA processes more generally.

BackgroundIn 2009 the UK National Patient Safety Agency relaunched its Being Open framework to facilitate the open disclosure of adverse events to patients in the NHS. The implementation of the framework has been, and remains, challenging in practice.AimThe aim of this work was to both critically evaluate and extend the current evidence base relating to open disclosure, with a view to supporting the implementation of a policy of open disclosure of adverse events in the NHS.MethodsThis work was conducted in three phases. The first phase comprised two focused systematic literature reviews, one summarising empirical research on the effectiveness of interventions to enhance open disclosure, and a second, broader scoping review, looking at reports of current opinion and practice and wider knowledge. The second phase involved primary qualitative research with the objective of generating new knowledge about UK-based stakeholders’ views on their role in and experiences of open disclosure. Stakeholder interviews were analysed using the framework approach. The third phase synthesised the findings from the first two phases to inform and develop a set of short pragmatic suggestions for NHS trust management, to facilitate the implementation and evaluation of open disclosure.ResultsA total of 610 papers met the inclusion criteria for the broad review. A large body of literature discussed open disclosure from a number of related, but sometimes conflicted, perspectives. Evidential gaps persist and current practice is based largely on expert consensus rather than evidence. There appears to be a tension between the existing pragmatic guidance and the more in-depth critiques of what being consistent and transparent in health care really means. Eleven papers met the inclusion criteria for the more focused review. There was little evidence for the effectiveness of disclosure alone on organisational or individual outcomes or of interventions to promote and support open disclosure. Interviews with stakeholders identified strong support for the basic principle of being honest with patients or relatives when someone was seriously harmed by health care. In practice however, the issues are complex and there is confusion about a number of issues relating to disclosure policies in the UK. The interviews generated insights into the difficulties perceived within health care at individual and institutional levels, in relation to fully implementing the Being Open guidance.ConclusionsThere are several clear strategies that the NHS could learn from to implement and sustain a policy of openness. Literature reviews and stakeholder accounts both identified the potential benefits of a culture that was generally more open (not just retrospectively open about serious harm). Future work could usefully evaluate the impact of disclosure on legal challenges within the NHS, best practice in models of support and training for open disclosure, embedding disclosure conversations in critical incident analysis and disclosure of less serious events.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

There has been growing interest internationally in how health services might more actively involve—and support the involvement of—patients in deciding about their treatments and in the delivery of their own care. Patient involvement can take diverse forms, and can be valued for a range of reasons. There has been a strong tendency for policies and service development initiatives to emphasize the need for health professionals to communicate to inform patients’ choice-making and to encourage patients to make particular practical contributions to their care. Recent studies of patients’ experiences, however, particularly in the context of breast cancer, have highlighted the additional significance of the relational aspects of involvement and the social factors (including those operating within healthcare settings) that influence patients’ potential to contribute. Further research and debate is needed to illuminate the ethical as well as the practical aspects of involving patients in their care.